Our not-so-normal normal summer days

A few days ago I decided to bring the girls with me to chemo this week. It is such a regular part of my routine: weekly for the vast majority of the last sixty-three months. Both of my beautiful girls have been there many times before but usually for pop-in visits, blood draws, shots, or some other shortish appointment. Little children in the hallowed ground of the Chemo Room is always a wonderful thing for the atmosphere. They are so beloved! This is the first time in a year either of them has come for a full treatment, and I’m glad for them to share the experience with me.

Before we left I told both girls to look nice, which in our house is not a super high standard of dress code, but dress codes are also rare. I asked them to pack a bag of things that could keep them quietly occupied while we were there. I instructed them to talk to my friends and look them in the eye, and, you know, demonstrate some basic level of polite conversation and manners. Please, Lord! And I told them they could each have one (and only one) snack from the plentiful snack offerings while we were there.

Greta, adorably, tucked in her shirt to her skirt and requested a fancy braid for today’s outing. She also accessorized with jewelry and requested “sparkles on her eyes”, wherein I dab some of my gold shimmer powder from my makeup on her eyelids on rare special occasions. In her bag she packed Blue Baby (don’t ask about our doll names, LOL) and a myriad of things to keep Blue Baby entertained. She also packed her audiobook PlayAway that we got from the library on Saturday. Basically they are single book MP3 players; they require a single AAA battery and headphones and you use the little buttons on the pack of gum-sized device to listen to a story. I got her one that has three Louis Sachar books, including Sideways Stories from Wayside School (nine hours of content). She is LOVING it, and has spent several hours each of the last three days listening to it. A major non-screen win, and great for her auditory processing. I listen to audiobooks constantly, and I’m planning on playing Gary Paulson’s Hatchet on our upcoming road trip with six people aged adult, adult, ten, ten, eight and six.

Maren planned quite the morning for herself: she had swim team practice, and then wanted to go for a run since she is doing her first triathlon this weekend. She managed to squeeze in the swim, a run, and a shower before we left at noon. I was impressed at the self-motivation she demonstrated, another in a long list of signs that she’s maturing. The one asterisk is that she climbed in the van with her packed bag, jewelry styled, and a favorite shirt on, however she had neglected to brush her hair post-shower. Which means she never looked in the mirror. She’s getting there people. Remind me of this when she’s spending hours in the bathroom in a few years, mmmkay? In her bag she packed the book she’s reading (one of the Fablehaven series, billed as a good match for fans of Harry Potter and Percy Jackson), a lunch box, and her friendship bracelet kit. She also packed her PlayAway audiobook, which she is highly recommending I listen to next: Park’s A Long Walk to Water.

When we got there the room was at capacity which is normal for peak hours when Dr. Wonderful is there, so we ended up in one of the curtained exam areas. I prefer the adjacent rows of recliners. The curtained area is offset and it’s separation and lying in a hospital bed makes one feel much more sick than does sitting in a recliner. However, it was nice because I think it made the girls more relaxed and at home, so that was a benefit I didn’t anticipate.

Greta was completely tuned in to all of the medical procedures that my nurse attended to: the donning of the sterile gloves and mask, the cleaning of the port, the port access, the blood draws and labeling, and the IV pole/pump/hook up. Maren was reading and remembers it from before, so she wasn’t as interested. I explained to Greta all the way along, and she was just watchful and interested — no fear or intimidation of the needles or process. I was proud of her. While the nurses mixed my drugs in the back room, I taught Greta to braid using the embroidery floss and she proudly made herself a bracelet and began working on a second one. Maren is making a collection of bracelets taken from a theme from one of her books, and she enjoys working with her hands while listening to her story.

I fell victim to the Benadryl that is administered through my port; this chemo drug has a high allergic reaction rate, hence the pre-emptive Benadryl — so I told the girls I had to take a power nap. The Benadryl Zonk is legit — if you try to fight the sleep, you’ll end up awkwardly drooling on yourself — not that it’s ever happened to me, of course. The girls kept reading/listening/braiding as I snoozed; they did so very well. When I woke up we got to visit with several nurses and a few friends, but not as many as normal since we were sectioned off in the curtained area. My Nurse Practitioner Rockstar came back to visit us and see the girls–she’s watched them grow up a lot over the past years. They really are part of this awesome community; it is my hallowed ground.

Today was still normal for all of us; my kids are as intimately acquainted with my cancer as they are with everything in my life. I’m glad for them to tuck this togetherness away in their memory bank. I’m privileged to mother them through this. My girls are brilliant souls.

Saturday kicked off a “screen free*” week for us. Obviously my version has an asterisk because there are exceptions. The whole idea, to be clear, is a hair-brained, ill-conceived, poorly thought out scheme if there ever was one. I’ve regretted it many weak moments of the past seventy-two hours and wished I weren’t an “if I say it, then I mean it” kind of mom. The few people I have told have laughed and basically confirmed that it’s overly ambitious parenting for mid-summer. And, it is; it’s reckless endangerment of peace. But one of my goals for the summer was to make sure that my kids would know boredom and then know how to solve for it in a healthy way. Self-reliant satisfaction, enjoying the pleasure of one’s own company, and blooming creativity: these are the worthy trophies for which I yearn for them. Brad and I are participating too: no television, movies, or game apps for any of us. And yes, I intentionally started on a Saturday so Brad would be home for the first forty-eight hours. He’s a champion, and I needed the solidarity. We’ve got this.

The audiobooks have been a much bigger win and impacted our success-to-whining ratio much more positively than I thought they would — they were a Saturday whim. This is the girls laying on blankets under the shade of a tree (see the two dots behind the soccer goal?) listening to their stories on Sunday afternoon. It was their idea and they were so content and cheerful. That was a moment I’ll savor.

The only DVDs they can watch are the library rentals: Kids Yoga and a tour of the Grand Canyon. They are yogis as a result, which I count as a win. And actually, they are really good at yoga. I need to up my yoga game.

We’ve added two board games to our rotation of favorites in recent months: Sleeping Queens and Blockus have joined the ranks of Chinese Checkers, Rummikub, and Qwirkle as our regulars. (And Greta’s in the mix for these new ones too — woo!)

Personally, I’m finding myself wiped out most days. It is to be expected with the combination of my activity level and chemo intake: it is not a hard equation to figure out. At this time I’m choosing exhaustion over backing down from the activity level, and while I know it’s not sustainable for the long term, it is workable for the summer. And, truly, summer is my jam. I love having my kids home and the freedom of summer. Losses are coming in the form of fewer legitimate workouts for myself that I could do if I fought harder to prioritize them, and much fewer focused interactions with other people. Phone calls, coffees, dates-not-playdates, etc, have been neglected significantly and I miss them. In the last two weeks I have however re-committed to getting a few hours of alone time each week because it impacts my awesomeness (or terribleness, if neglected) so very significantly. I have to create the space to be just Jen before I can be good for anyone else. Maybe not everyone needs this but I sure do!

Several times this summer, I’ve had people say,

-I don’t want to bother you…

-I hate to ask, but…

-I’m afraid to call/message because I don’t want to…

So, despite what wrote above about my exhausted-ness, I really do want to be bothered, asked and messaged. Yes, I’m tired and my capacity is diminished, but to not be invited or pursued brings a level of isolation and loneliness that is — obviously — an added level of hardship. I felt that worth stating out loud on behalf of myself and other people in comparable situations to me. Remember: never say “Let me know what I can do.” Think of something that rings true to the relationship you have with the person, and do that. Insist. And do it big. You won’t regret it.

It brought me great joy to be asked to babysit a family of three while their parents did something important kid-free. I got to serve. I appreciated a friend said, “No, I can’t” when I asked her for a favor. I know I can ask this friend again, as she knows her limit. I love that every favor I’ve asked for have been answered, even if it takes a few tries. I have an amazing village. It has been a tremendous saving grace (for my peace, thus my family’s welfare) that a friend is doing my Monday Quick Cleans all summer, ignoring my intention to give our selfless servants a break by taking them off the care calendar for the season. She, in her wisdom, saw a need I didn’t know I had at the time. I’ve appreciated the messages and requests for time from friends, including and most especially the ones I haven’t gotten back to. (Yet.) I love them. I love the comments, mail, and threads from my out-of-town family and friends.

Summer. It’s exhausting. It’s normal. It’s refreshing. It’s chaos and clutter and lazy and frenetic. It’s equal parts sticky with magnificence and maddeningly full of whining… and I wouldn’t trade it for anything. Let’s do summer well. We’ve got this.

Jen,
I haven’t seen Roz in forever, but I sure see her a lot in y’all! Great looking family!
I pray y’all enjoy your summer!! I was the mom that cried when the kids went to school lol! I loved having the kids around all bored looking for something to do 🙂
God bless y’all!
Dotti

Hi Jen! You must add Happy Salmon to your game list! It’s s fun, fast-pace card game that everyone can enjoy. Check it out. Enjoy the no screen time—I think it is a wonderful concept and try to practice it myself, however, info for at least an hour per day. This is a tough feat while working and going to school, both of which a full-time. I do notice that my brain and my eyes benefit greatly! ?

It’s comforting to know that someone else struggles to find the best combination of “alone time” and “social time” to be healthy! In my life it seems like if I’m getting enough of one, I’m not getting enough of the other. Good luck finishing strong on the “Screens-Free Week”!

Jen, it is good to hear your summer story.. You are so awesome, have more strength than Wonder Woman, more fun than a clown, and a heart of a Saint.. I remembering your girls coming in when we were doing Chemo at the same time.. They are growing up to be such nice young ladies. You are doing so well with their upbringing and understanding life.. You go girl and keep it up..Enjoy your summer and have the best time ever.. Sending hugs and prayers my friend..

I love you. I love the way you parent and intentionally develop your girls. I love the perspective and determination you have for caring for your personal needs. I love your perspective on community and service to friends.

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